How to suffer heart failure aged just 30!

by Richard Tyrone Jones.

This April I, Richard Tyrone Jones, an otherwise-healthy, gym-going, everywhere-cycling, non-smoking, mostly non-alcoholic poet, managed to win ‘ideopathic’ (ie mystery) heart failure that would leave my distended, saggy water bomb-balloon heart pumping at just 10-15% of its optimum capacity. How did it happen? How did I manage to not notice that the most vital organ of my body was rebelling against me? Have I come to terms with the destruction of my physical powers? Was my doom in any way connected to the fact that, less than a month earlier, I had held my own comedy funeral to celebrate my thirtieth birthday, laughing presumptuously in the face of death?

The run-down run-up

Some context - in 2005, I had been diagnosed with atrial fibrillation – an irregular heart beat. But then, I had also been drinking over six cups of coffee a day, My louche, aristocratic GP who listened to classical music during consultations merely advised me to cut down on caffeine – which I duly did. So when, towards the end of 2009 I began to experience feelings of knackeredness, lethargy and even not wanting to drink or go out womanising any more (very much antithetical poet behaviour) I naturally put it down to depression, got on the waiting list for some cognitive-behavioural therapy, booked myself a holiday to Rome in December to visit Keats’ grave and got on with my normal punishing schedule of getting up at eleven, writing half a poem, coming up with some stupid themed spoken word event like ‘Utter!’ Unicorn poetry and programming seemingly all the spoken word to occur at the 2010 Edinburgh festival.

Pains, planes and migraines

But further symptoms began to show themselves. I had palpitations on the plane, and I’m not really that scared of flying. When the plane landed and an excitable family clapped I actually snapped ’shut up!’ (After all, you don’t boo if the plane hits turbulence, or shout out requests to loop-the-loop.) I also began to experience terrible stroke-like migraines, increasing in frequency (I’d last experienced these about ten years ago at university – they’d disappeared when I’d had my wisdom teeth and any academic ambition removed.) My lumbar back pain continued to give me gyp – to combat this, I continued in my ambitions to get fit, cycling everywhere to combat Boris’s TFL fare hikes, doing press-ups and sit-ups (almost) every day, and even joining Archway gym.

But despite my doing everything I could to feel better, in March I had a terrible migraine whilst in the gym and indeed, two in the same week. I found I couldn’t cycle back from Holborn to Archway, normally not a problem, having to get off and push halfway through, completely gasping for breath. I came down with a horrible mutating cold-cum-sore throat-cum-hacking cough-cum-nose-faucet through which I bravely (stupidly) hosted two open mics at the Cross Kings and several comedy gigs, despite by then not being able to cycle at all, walking very slowly and breathlessly like the Stay-Puft marshmallow man and suffering occasional chest prangs like I’d been stabbed in the side with a fork.

My GP sent me for an MRI brain scan due to the migraines. This was like being strapped into a Japanese pod-hotel and forced to listen to Finnish techno Op-noise pioneers Pan_sonic for twenty minutes, so not unenjoyably dissimilar to my normal cultural life. It came up clear, but an electrocardiogram revealed the atrial fibrillation had lingered. I was booked in to wear a twenty-four hour electrocardiogram monitor (which also goes by the far sexier name of ‘Holter strap’) and go for an echocardiogram. I stopped even any pretence of drinking or womanising, though still attended a birthday party which must have been 30^th June 2007-themed, for everyone was smoking inside causing me to retch my guts up. The night before the echocardiogram, I was up coughing all night and shuffled to the doctors to be given antibiotics. I rejoiced, tweeting ‘Hooray! I have a mere chest infection, and not the incipient heart disease I was petrified I had.’ THAT will teach me.

The echocardiogram was a bit like watching unedited footage of the 1986 Dennis Quaid film Inner Space; I resisted the urge to ask ‘Is it a boy then’? of the muscular black man homoerotically massaging my chest with a lubricated cold metal probe – every twat must make that joke. His grey-haired superior popped in and, although he certainly didn’t, in my memory he advised his colleague to ‘track left, enhance’ to reveal, on the wall of my left-atrium, what looked like a low-resolution puckered arsehole blowing me a kiss. When the effete, rotund Asian doctor, who seemed to enjoy comfortingly patting my leg a bit too much, told me me I had a blood clot in my heart which could cause a stroke and that I’d have to come into hospital I thought this was the most terrible news I’d ever received. THAT will teach me. He then went on to explain that my heart had also become distended due to the effort of pumping, and therefore weakened, increasing the risk of a cardiac arrest. I had the presence of mind to point out that when I’d had to stay overnight to wait for the MRI scan I’d been kept up all night by a snoring fat stupid man and that I’d really need a room on my own. Being an arsehole works, as I got one, on the tenth floor with a view looking out over London.

Home Free (Royal Free)

If you must suffer chronic heart failure, do try and get into the Royal Free, rather than somewhere like say Homerton. The nurses are all lovely and you either get a great view looking south over London towards St Pauls, St Pancras, the Eye, Goldfinger’s Trellick Tower, even Big Ben, or, on the other side, some of Hampstead village and Heath. For the first couple of days I was in poor health but good spirits, receiving visits from friends, fans and family, well-wishers and my lawyer (turning the comedy version of my will he’d read out at my funeral into a real one, just in case, not that I’ve got much money you understand, you grasping vultures, it was mainly deciding who’d publish my second book ‘Crush All Liberals’ and who’d get my 90s ambient/techno vinyl). I even tried to keep up with my National Poetry Writing Month assignment of writing a poem a day (sample line: ‘Liberals: Women or Muslims? Women: feminism or chocolate?’) - perhaps it’s best that I gave that up. My happiness at seeing my name (correctly unhyphenated) in the Latitude line-up was tempered by my uncertainty as to whether I’d be alive to perform.

Diagnosis Bludclaaat

Every doctor I spoke to seemed amazed that I hadn’t been on warfarin, to thin the blood, since I was diagnosed with atrial fibrillation back in 2005. (Warfarin also works as a rat poison in this manner. Apt.) The interminable interrogations were answered along these lines: 1) No, I’m not really an alcoholic. ii) No, I don’t really party that hard. I’ve had a pinch of mephedrone but only because the Daily Mail recommended it so highly. c) No, none of my forebears have died of heart problems – we tend to go mental instead. IV) Well, I went to Italy in December, but that’s hardly really foreign is it? 5) I’ve not touched up any deer. f) Yes, I may have offended the gods.

The quacks whacked me on Warfarin (best brand name ever), beta-blockers to slow the heart rate down, ACE inhibitors to hopefully shrink my distended heart and give it some of its elasticity back, plus blood-thinning injections in my belly which have left it looking as bruised as if nurses had been pummelling me all night with ball-bearing-filled socks (but without the attached pleasure). All these drugs lowered my blood pressure with the effect that, five days in on the Sunday, I had a coughing fit which required me being moved to the Cardiac care unit on the same floor to be hooked up to machines and oxygen. Pale of face and drained of energy, I still had the presence of mind to issue a royal wave as I was carted off to the Cardiac Unit on the same floor. This reassured my housemate and sister who’d visited in the middle of all this, but not myself at all. I was actually scared I was going to die.

Worst racist ever

That night they decided it would be a good idea to hook me up to a ‘line’ which would go directly into my heart so they could measure its pressure and feed drugs directly in. It was too dangerous, given my condition, to give me general anaesthetic for this ‘procedure’ – they don’t like to call them operations these days – so I was sedated and given local anaesthetic. Despite this, I still had to fight the need to hack up phleghm all the way through and could feel the surgeons cutting my neck and failing to get the line in the right way at the first couple of attempts. Afterward, I was wheeled into a cellar and left to cool, unable to move my neck due to the local. I aimed a gob at the cardboard spittoon to the left of my mouth, hawked, and spectacularly missed, gobbing on the floor in front of the staff. Who I then realised were all South-East Asian. Not wishing to seem like a racist, I immediately apologised, then worried that I might merely have seemed like the most cowardly rubbish racist ever.

I’ve always had a massive fear of needles, ever since I was five and once had one pushed into my septic thumb, causing unbearable pain. The next morning, some fool phlebotomist tried to take a blood sample from my arm rather than using the drainpipe I’d gone through so much trouble to have buried in my neck. I had a vaso-vascular fainting fit in which my blood pressure dropped massively. Peeling out of consciousness, I had to be brought round with adrenaline. This was also the day my concerned Mum & Dad visited, to find me bed-bound, exhausted and having to drink perpetually, as adrenaline does give you a very dry mouth.

A word on shitting.

If any of you think being so weak you have to crap in a papier-mache hat then have your arse wiped by a nurse might prove an erotic experience, you’re wrong. Especially when the said nurse doesn’t actually do that thorough a job of wiping your arse (of the frankly orange, cement-like ackymoomoo), and you have to get rid of her by saying you need a piss (in the papier-mache gourd) so you can finish wiping it properly yourself. And here’s another tip. Saying to that nurse ‘Some people would probably get off on something like this, but not me, I can assure you’ is, on balance, unlikely to assure her. Sample line from my diary at this time: ‘You want Disneyland, you get Dignitas.’ It would be fair to describe this as a low ebb. I haven’t really done much crying during this whole ordeal, but I did then. My family think I’ve been very brave; I haven’t. I just don’t think I can even now quite actually believe this has happened to me. It’s simply so incompatible with my self-image. The next day I found out the hospital in fact had wheelchair-toilets you could sit in to crap rather than balancing on the bed. Of course they do.

Clogged pipes

The next day the senior Doctor popped round to take a look at how badly I was doing. When he enquired of the junior doctor, regarding the line in my neck, ‘Oh, so you thought you’d give him c.diff and diarrhoea too?’ I realised that procedure may not have been quite as necessary as I was led to believe. ‘Oh, he’s already got the diarrhoea’, replied the junior doctor. It was only at this point, by the way, that the doctors decided to put me back on the antibiotics that they had taken me off on entry to the hospital (as it could interfere with the warfarin). It turns out that all along, I’d had both a chest infection AND heart failure – one variety of phleghm (brown, bit like Wrigleys chewing gum, left lung) from the infection and the other (frothy, kept its body, more like hawking up a cloud, both lungs) caused by lack of blood pressure causing blood to pool in the heart and leach out of it into the lungs. Simple, when you think about it. I slowly began to perk up after that.

Unclogged pipes

So on Tuesday 6^th it was time for my angiogram – a delightful procedure where they open an artery in your groin and spray up slightly radioactive chemicals (they call it a ‘dye’) to find out if your arteries are furred up like a seventy-year old alcoholic butcher’s. They were also going to take a biopsy of the heart – ie scrape a bit of meat off the inside to find out what the hell had caused this business in the first place. In preparation, a nice nurse who I would have fancied a bit had I not been rendered almost completely impotent (in a situation in which complete impotence would certainly have been preferable) gave me some shit safety razors, soap, not shaving foam and lukewarm water to shave half my pubes and the top of my thigh. Having done so without assistance and donned the fetching hospital paper pants, they then went in through my wrist. Oh, these traditional hospital cockney wind ups! And, as it ‘would not have affected the way they treated me’ they didn’t do the biopsy – meaning I’ll never know what caused the whole thing, and we’ll never know which is more perilous: mephedrone, Rome, or red deer. The ‘procedure’ having been delayed for ages, I will never forget the relief at being able to eat after eleven hours.

Harkonnen Death-Plugs

Sometimes you run out of news in hospital, given that the TVs cost £3.50 per day, but the next day (Weds 7^th) I got, courtesy of James Ross, media monitor and improv. comic, no less than four papers, and five visitors, which cheered me up. I was also feeling good enough to get up out of bed for the first time in two days, and, with permission, unhooked myself from my drip to go to the loo in the night. I’d already remarked to myself that the tri-pipéd drain coming into and out of my neck reminded me of the death plugs that Baron Harkonnen instals in his red-headed subjects in David Lynch’s film version of Dune, and plucks out to bleed them to death for his leisure. (Oh go on, watch it. It’s got Sting in it but it’s great.) So I checked nothing was coming out of it, got up without falling over, shat, and went back to sleep. Of course, I woke up in a small pool of blood, collected in the acute angle of the propped-up bed. I somehow managed not to faint while the night staff cleared it up and put a stopper on the neck line. They removed this purposeless monstrosity the next day. I realised I’d basically had dried blood gathered round my neck like a black pudding necklace from the time it had been put in. Everyone had been too polite to tell me.

That was the 8^th April, and time for my MRI scan at the Heart Hospital, Marylebone. Up at 6am for an early breakfast, I was so unbearably happy to be leaving the hospital after nine days, even though I only briefly felt the cool breeze of freedom, and saw only the rooftops of houses on the way from my position strapped down in the back of the ambulance, that I cried like Henry Rollins with an abandoned puppy. God knows what it’s like for people who are in hospital for longer than a couple of weeks – or who don’t have supportive friends visiting them every day and forcing them to be positive (or at least, more jokingly morbid).

IDC, ICD

It was only on Friday 9^th that I actually got my diagnosis – ‘Ideopathic Dilated Cardiomyopathy.’ Christ, I’m so sick of describing what it is to people. Just look it up. Basically, mystery big strained inelastic baggy heart of an old man. The Heart Failure Nurse came to see me. I told her she will never be as popular as the Tooth Fairy, say, or the Pube Goblin and may need rebranding. She tells me they are indeed going to give me an intracardial defibrillator (like a pacemaker, only better), as I am now more at risk of developing heart rhythms ‘not conducive to life’. Which is one way of putting it. If the ICD goes off, it still might dislodge the clot and give me a stroke – but hey, a stroke beats a cardiac arrest, right? She also can’t promise me that the drugs I’m on are actually going to make me better. Some things I now can’t do, I probably wasn’t ever going to get round to anyway – deep sea diving, sky diving, not because they don’t seem appealing to me so much as because the people that do them are mostly twats. Yet other things I might not now ever be able to do, I’ll actually quite miss – like drinking, moshing, hiking Dark Age border monuments, my career as a live poet and literature promoter. The thought occurred to me that it would be ironic if all my heart problems had dated back to when I first watched the Jason Statham film ‘Crank’ and I couldn’t really pay attention after that.

Ward of the Gorgs

As a punishment for getting a bit better, you get moved to a shared ward. The old Asian guy opposite me with a hangdog face looked, when his oxygen was off, like one of those big monsters that used to try and eat the Fraggles in Fraggle Rock (not the Doozers, the big ones). Everyone was old, except the young guy opposite me who freaked me out when the first thing I hear is him on the phone: ‘Yeah, I ‘ad a ‘art attack, bruv. Too much charlie, innit?’ A couple of days ago he’d got a bit claustrophobic, pulled out all his drips and run outside for a fag, before collapsing. I hid my phone and wallet in my pillow while I slept just in case, but the next day it turns out he’s quite friendly and when he checks out gives me a 24 hour telly card. I SHALL watch Doctor Who! He also left his smoothie which I tell the nurse he said I could have. I could’ve had his dinner too. A note on hospital food: invariably of variable quality, will invariably give you the shits.

Members of my old comedy group Fat Fat Pope visit. We’d invented a new superhero: ‘Manboy’ or ‘Boyman’. Bitten by a radiactive goth during his first kiss, his puberty never ends. A bit like Spiderman, he can shoot prodigious amounts of a sticky gelatinous substance from his wrists, he’s often very idealistic but sometimes apathetic, is very hairy and has one massively powerful fiddler-crab like arm. We spyed on London with my binoculars, which my housemate, a nurse who works at the Royal Free, had brought in, and decided that if a band called ‘Infinity’ were to acrimoniously split and go to court over legal rights to the name, any judge worth his salt would throw the case out of court because Infinity divided by 2 = Infinity. The Pope bought me this joy plus a £3.50 TV card so I wouldn’t have to decide whether to watch Doctor Who or Country File. (In the end, the card Coke attack guy gave me didn’t work, but I got a free 45 minute sample of TV when I registered. So I got to see Doctor Who anyway. Oh, these things matter when you’re in hospital.) Then my sister arrived from the Midlands and pushed me around the hospital’s ground floor in a wheelchair. Never before has hack artwork seemed so much like freedom.

Next day, Sunday, the migraines returned. I knew what I had to do and instantly took one of my own migraine tablets – didn’t care if it clashes with the drugs they’ve put me on – and it knocked me out for a couple of hours. When I woke up, by being wheeled outside I could get around the two-visitor rule and indeed had six (seven if you count my sister phoning from Switzerland). A record, and so great to just be FREE, outside, with the sun on your face, that I stayed out there a bit too long. I had another migraine the next day, but managed to get out of it by sitting in the dark and talking to a very sympathetic fellow poet who’s spent a lot of time in hospitals herself – indeed, was once wrongly diagnosed with a fatal condition. She brings me colouring books, pens, and a McDonalds milkshake so is even more welcome.

Gattaca

The next day I did something I’d been putting off – phoning the clinic with whom my Cambridge Graduate sperm has previously proven so popular with childless couples, lesbians and just plain women to let them know that actually, although we won’t know for months, and it’s unlikely given no-one in my family has had such early-onset heart problems, there’s a small chance my five + biokiddies might also turn out to have fucked up hearts aged thirty. But then that’s what happens when you play lucky dip. This got added to the long list of things-I’m-trying-not-to-think-about.

‘He’s had a gap’

Since being moved I’d been wearing a little remote control pulse sensor with crocodile clips to sticky metal nipples they pop on your body. And it’s a good job I was, for just after I’d been talking to an American student nurse about my condition, I got massive chest pains like someone had stuck a girder in my chest, reached for but didn’t make the oxygen, started sweating like a pig and passing out. I really think it’s the end, but the matron who wiped my arse so negligently has been watching over all our hearts and now comes good, striding in to tell the doctors who’ve just moved on from talking to me ‘he’s had a gap.’ They recongregate and quickly bodge holes in my arms for canulas while I quietly murmur how I want water on my face and I love my mum. The junior doctor tells the student doctor to get my t-shirt off. She asks ‘how?’ It gets cut up, just like they do on Casualty when, as a child, I thought it was a terrible waste of clothes. Ironically, it is a t-shirt by morbid performance artist Charlotte Young which reads ‘My _____ got killed by a _____ and all I got was this lousy t-shirt’, so stitched back up again by red twine it should actually work pretty well. I’m back on the CCU, pumped full of adrenalin and shivering like a hostage. It was very gradually that I regained my senses after that eldritch flight through stygian space. But, sadly for my own self-mythologising, my heart hadn’t actually stopped, just slowed down immensely. An ICD will correct such slow or fast heartbeats, and exaggeration in the poem I shall write about the experience will correct reality’s shortcomings.

The doom that came to Hampstead

Recovering, much more quickly this time, in the other room, I had a view of Hampstead and the Heath again. Maybe H.P. Lovecraft isn’t the most suitable reading matter whilst still close to the actual portal between life and death, but, half-asleep, I imagine its middle class denizens having wiped out the atavistic amphibious half-humans of Frognal some time before the arrival of the Romans, and the former’s re-emergence 2000 years later in ‘The Doom that came to Hampstead’. Boy George, who gave my lawyer directions to the hospital, Judy Finnigan, David Baddiel, would all fall foul of the spirits of the frogmen disturbed by workings on the deepest station on the underground, and all be transformed in their beds to slimy, fat, wide-lipped gill-heaving amphibians. Tim Burton would not be bothered, simply thinking he had awoken in one of his own films.

‘Managing Expectations’

Even after our respective drugs, the blood pressure of the Nigerian-American fitness fanatic guy opposite me was, at 170, over twice mine. He’s eager to point out he’s never done any drugs and ‘never had to to get the ladies to talk to me, you know?’ The other guy, a council caretaker, has cardiomyopathy too, but does drink half a bottle of vodka every weekend. He is 58. I realise my youth is definitively over. Maybe I can still lever things like getting married or writing a novel into the gaps in my to-do list heaved out by ‘marathon’, ‘get a proper job’ and ‘be Doctor Who’. I do have to shave my chest for the ICD (I keep calling it pacemaker though – Christ, my Grandad¹ was 80 when he had to have his pacemaker) but that 15% ejection fraction is making me forgetful and the hair clogs up the shower like I was shampooing a red setter. They had to fetch the water suction machine. This was a welcome diversion. I was, as usual, scared I’m going to die during the op and so make sure I listen to skullstep DJ Donny’s Filthcast and read Lovecraft’s ‘The Rats in the Walls’ as my potential last act.

‘I’m not going to die listening to Phil fucking Collins’

During the operation, sorry ‘procedure’, I requested classical music on the radio, arguing ‘If I do die on the table, I’m not going to die listening to Phil fucking Collins.’ Thankfully, the staff agree, and it’s nowhere near as bad as the line going in my neck and only as bad as the angiogram, and although I’m conscious, the sedatives work so well I quietly plead for more. Dr Shiu is very efficient (I’d recommend him) and, as he’s expertly stitching me up, Wagner’s Ride of the Valkyries swoops onto the radio. Off my face on Diazepam, this counts as a moment. I wish I’d not wasted my intellect and had instead chosen a proper career. Like Doctor. Actual Doctor. I could’ve saved some people and retired early to write poems about it, providing I didn’t faint every time I actually had to inject somebody. Now, I am on the other side. I have a belly like a punched apple, am striated by stretch marks, a scar on the outside left, a clot on the inside left, unsteady on my feet, walking slower than an old man, I am like a disabled fawn who has given birth to itself. I’m disappointed to find that my pacemaker’s actually only worth £10k, and not £50k as I’d previously been told.

Two days later I’m ready to go home. My publisher will be very pleased to know that I did manage to sell one of my books, (Germline, Vintage Poison Press, RRP £6.99), on the last day, to a nice Greek businessman called George whose son is doing a degree in English (more than I ever managed). Another, I gave to the staff, inscribing the names of all the ones I could remember (at least one of them, called Aimee, liked it) and anyway, it’s cheaper than a card. Back at home with the help of my housemate Hannah I sat in the garden, watched Dr Who on a big big screen and cried for the beauty of being free in Springtime.

Two days later I was back in hospital. In Dudley. After three days there surrounded by less attractive nurses (sorry Dudley) and sleeping with an oxygen mask on and a woolly hat pulled down over my eyes to keep out the lights they turned on at seven, I’m out again now. But I still can’t walk for more than one hundred metres of breathless shuffle, I haven’t done a soid motion in two weeks and they refused to give me a stick. Life’s shit isn’t it.

A summing up, lessons learned, etc

I should point out that my Dad still thinks that all this is God’s judgement on me holding my own funeral while still alive (although he never goes to church himself and is also a bit racist). He also seems to have developed some emotional responses, which is frankly embarrassing. I have issued a formal apology to any deities who may have been offended, but have yet to receive a response.

A big shout out to everyone who came to visit me in hospital, sent me a card or wished me well on facebook or via text. Your support really meant a hell of a lot to me and you know who you are. However, now that I’ve written 4923 words hopefully people can stop asking me what happened now?

Oh yeah and can someone please publish this article. Those of you who write for the Guardian, ES, Metro etc know who you are. I need the money to buy a stick.

Cheers,

Richard Tyrone Jones

Www.utterspokenword.com

http://bit.ly/utter

http://bit.ly/richardtyronejones

PS – What does this mean for ‘Utter!’ spoken word, I hear you cry, especially at PBH’s Free Fringe at the Edinburgh Festival? It means it’s continuing, but with a lot more help from other talented spoken worders like James McKay, David Floyd, Niall Spooner-Harvey, Danni Antagonist, Rachel Rose Reid, George Chopping etc. I may well turn out to be more of a backseat Malcolm McClaren/Davros of spoken word. Watch this space. And this one too: http://bit.ly/uttersex - it’s on May 20th.

Tags: adrenaline, blood, bloodclot, bruises, cardiomyopathy, death, dudley, failure, free fringe, funeral, guardian, hampstead, heart, hospital, illness, james mckay, lovecraft, migraines, pbh, poetry, racist, richard tyrone jones, rtj, shitting, spoken word, utter!, warfarin, writing